Tuesday, September 14, 2010

qotd: Racial disparities a death sentence for muscular dystrophy patients

September 13, 2010
Blacks with muscular dystrophy die 10-12 years younger than whites: new study

African Americans with muscular dystrophy die 10 to 12 years younger than their white counterparts, according to research published in today's (Tuesday, Sept. 14) issue of Neurology, the medical journal of the American Academy of Neurology.

The black-white mortality gap, which was calculated on the basis of 20 years of data, is among the largest ever observed in the annals of research into racial disparities in health care, say Dr. Nicte Mejia and Dr. Rachel Nardin, co-authors of the editorial. "Furthermore," they write, "white patients with MD [muscular dystrophy] enjoy increasing survival, while survival of black patients with MD barely budges," leading to an ongoing widening of that gap.

"Inequities in the health delivery system – and the multiple ways in which race constrains access to care – seem the most likely explanation for the observed MD black-white mortality gap," Mejia and Nardin write in their editorial. But they add that inadequate access to care due to lack of good quality health insurance may also be part of the picture.

"Nonelderly African Americans are 1.5 times more likely than whites to lack any type of insurance and about twice as likely to rely on Medicaid," they write, noting that lack of health insurance is linked to lack of access to care.

And while Medicaid, the public health program for the poor, compares favorably with private insurance in providing access to primary care, it falls short when it comes to providing access to the standard-of-care treatments needed to manage conditions like muscular dystrophy, they say.

These shortcomings of Medicaid coverage are "particularly worrisome because more than half of the new health coverage under the 2010 National Health Reform will be Medicaid."

In a separate comment made today, Nardin said, "Replacing the current U.S. health care financing system with a single-payer system that would ensure comprehensive insurance coverage for every American, regardless of race, would go a long way toward reducing this type of disparity."

Neurology: Widening gap in age at muscular dystrophy–associated death between blacks and whites, 1986–2005

Comment:  It is shameful that we have tolerated for so long a health care system that has failed to address the inequities and injustices exemplified by a widening black-white mortality gap in patients with muscular dystrophy - an inherited disorder inflicted on blameless victims.

Opponents of true reform (based on principles of health care justice) often blame the victim, implying that it is not the deficiencies in our health care system that are to blame, but it is the patients' own personal failures that result in their predicaments, and we have no responsibility to intervene.

Even the most callous opponents of reform may acknowledge that there are exceptions in which the victims cannot be blamed, but even in those instances, the unfavorable outcome is often attributed to other socioeconomic factors over which we have no control. The "leave me out of this" mentality certainly contributes to our national inertia.

Maybe we can't fix everything that's wrong with our health care system and with society in general, but what we can do is reject the message of the passive obstructionists who contend that we're each on our own, and join together in solidarity to address our societal deficiencies that have permitted terrible injustices such as sentencing muscular dystrophy patients to die a decade early merely because of their personal circumstances associated with being black.

The Patient Protection and Affordable Care Act will provide many of these unfortunate individuals with access to an insurance program, Medicaid, but as a chronically underfunded welfare program, that in no way ensures access to the actual medical care that they need. Many of them are already on this program, yet it doesn't prevent them from dying a decade earlier than they might otherwise.

Although we have much to repair in this nation, a very good place to start would be to enact a health care financing system that would ensure that all of us receive the health care that we need - an improved Medicare for all. Furthermore, since collectively we are multi-tasked, we can revitalize and expand simultaneously our work on all of the other social justice issues as well.

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